We went today for our monthly echo to check out the status of Gabriellas condition. Doctor said she is stable, but progressing. Her left atrium is even larger than last month and the pressures are a bit worse. I asked him how big it could get before it became critial and he said there is no saying. He said there was no reason to delay things with the transplant and he was going to make some phone calls to get things rolling. Obviously we can't let it get to the point where we find out how big is too big. I couldn't imagine how much worse things could be if we hadn't caught it as early as we did, because the Atenelol is helping her believe it or not. Without the Atenelol, it would be even bigger than it is. We talked a bit about this heart defect verses other more typical defects. He has never seen exactly what Gabriella has. He has seen either the myocardial bridging OR the RCM but never both. And he explained how her condition has no treatments or medications, unlike other conditions that have a whole array of medications to relieve issues. Lovely, right?
We asked about travelling, also. A change in elevations could put too much strain on her heart but we are cleared to go to stay with friends in Sacramento in August and also for a Make a Wish trip once we get that going. I hadn't thought about how stressful a change in elevation could be until her recovery nurse mentioned it last Tuesday. He did warn me that while flying if she gets short breathed or shows some symptoms, she may need a few puffs of oxygen. Stuff I hate having to know but glad I do.
The blood work from last week came back "crystal clear" which is fantastic! Makes it so much easier to find a good donor match when there are no other complications! We are waiting on results from all the other tests still.
So we wait, again. We are getting good at waiting! This time waiting for Loma Linda to schedule our visit and get her on the list. This Thursday is the stress test which is out last bit of pre-listing tests to be done in Arizona.
Thanks to everyone for continued prayers. We survive through the strength your prayers have given us!
1 comment:
HORRAY for crystal clear blood work!! Her echo sounds okay, not TOO much worse.. so that's good. Good luck with the stress test, I'm sure she'll Pass. I'd be on the phone with Loma Linda every few days, bugging them (or keeping them updated) until I had a schedule :).
Any news on when you'll hear from make-a-wish??
Andrea
Post a Comment